Public Health Laboratory

Newborn Screening Program Information:
Announcements

Beginning June 19, 2015, we will communicate sickle cell trait (SCT) status to both providers and families of newborns identified with SCT on the newborn screen. This change is part of an effort to standardize regional differences in communicating SCT results.

Providers can expect the following communications for any newborn who has a screen collected on or after June 19th and who is identified with SCT:

A mailing to the baby’s parents that includes:

A letter explaining the result and next steps

A parent/patient handout explaining SCT

A list of additional resources

A fax to the baby’s provider that includes:

The patient’s newborn screen results

A provider fact sheet on SCT

A parent/patient handout explaining SCT

A list of additional resources

A letter was sent to Minnesota pediatric and family practice clinic managers and out-of-hospital birth midwives prior to June 19 explaining these changes. Please contact Jessica Tarnowski at 651-201-5515 or jessica.tarnowski@state.mn.us with questions or concerns.

NEW!Newborn Screening Infographic for Parents

We have a new Newborn Screening Infographic available to order! The infographic is designed to help providers educate parents about newborn screening and their options after screening.

Every new parent should receive a copy of the Newborn Screening Infographic AND Newborn Screening Fact Sheet prior to screening. Providing this information to parents and answering any questions prior to screening is required by Minnesota law.

Birth facilities will begin receiving Newborn Screening Infographics with every screening card and fact sheet shipment. In the meantime, order free copies for your nursery or clinic today! Visit our Education Materials and Forms page to place your order.

We will be offering free educational webinars for providers to learn more about this new tool and parental options after screening on June 18 and June 23. Please follow one of the links below to register:

Celebrating Laboratory Professionals Week!
April 19-25, 2015

Berta's Story

I came to work for the Minnesota Department of Health at the end of 2009 from the University of Minnesota. The Newborn Screening Program was a new and unknown environment for me because I had always worked in research institutions. But it was an exciting time for newborn screening in Minnesota: an immune disorder known as severe combined immunodeficiency (SCID) was going to be added to the list of disorders all newborns are screened for, meaning that even more newborns with serious illnesses would have a chance at treatment and a healthy life.

I started working on screening for SCID as soon as I joined the laboratory and traveled to several states to be trained by scientists in those programs who pioneered SCID testing. I realized that this project was going to be different from what I was used to. It involved not only the development of methodology, a task that I was very familiar with, but also all of the rigorous steps that must be taken to ensure the timely and accurate reporting of results.

Screening for SCID was implemented at the beginning of 2013. So far 16 children have been diagnosed with an immune deficiency with the help of newborn screening and are now receiving proper care, increasing their chances of living a healthy life. Although it’s sad to know that a baby is sick when we find a positive result, it is rewarding when the tests we run are able to detect that disorder, so that the baby can get a diagnosis and treatment before it is too late.

I am very proud to be part of the newborn screening team – a great group of people who really care for the health and well-being of Minnesota babies.

-Berta, Research Scientist, Minnesota Newborn Screening Program

Upcoming appointments to the Advisory Committee on Heritable and Congenital Disorders

On April 3, 2015, the Commissioner of Health will appoint or reappoint the following people to the Advisory Committee on Heritable and Congenital Disorders (Newborn Screening Advisory Committee). Membership terms run from January 5, 2015 through January 7, 2019.

Appointee

Position

Mark Bergeron

Clinician and researcher specializing in newborn diseases and disorders

Vikas Bhambhani

Clinician and researcher specializing in newborn diseases and disorders

Jenny Bock

Nutritionist

Kirsten Dummer

Clinician and researcher specializing in newborn diseases and disorders

Robert Jacobson

Primary care provider

Steven Johnson

Parent

Amy Karger

Newborn screening laboratory professional

Jan Larson

Parent

Kristin Loncorich

Birth hospital representative

Stephen Nelson

Clinician and researcher specializing in newborn diseases and disorders

Michael Nwaneri

Primary care provider

Martha Overby

Other expert as needed representing related fields such as emerging technologies and health insurance

Annamarie Saarinen

Other expert as needed representing related fields such as emerging technologies and health insurance

Kyriakie Sarafoglou

Clinician and researcher specializing in newborn diseases and disorders

Jennifer Ward

Clinician and researcher specializing in newborn diseases and disorders

Pulse oximetry screening implementation update

Our program staff is in the process of implementing a reporting method for pulse oximetry screening results for critical congenital heart disease (CCHD). A law passed by the legislature requires that CCHD screening be provided to all newborns before leaving the hospital. Early detection of CCHD can save lives.

To facilitate results reporting for hospital nurseries, we are in the process of implementing an electronic system to report both pulse oximetry and hearing screening results to MDH. The electronic system, MNScreen, is already in use in some Minnesota hospitals with a goal to implement the system statewide this year.

If your nursery has not yet learned about MNScreen or begun plans for implementation, please contact Amy Gaviglio at amy.gaviglio@state.mn.us.

Stored blood spots are NOT used for any research unrelated to newborn screening or shared with any external or other government agencies without written consent from parents or legal guardians. Learn more on our FAQ page.

Parents have options regarding newborn screening. Talk with your healthcare provider if you have questions about your options, or learn more on our Parental Options page.

Newborn Screening 2014 Prenatal Survey Results

We would like to give a big thank you to the 1,070 parents and 396 prenatal providers in Minnesota who responded to our survey about newborn screening education in the prenatal period. The survey was distributed in the summer of 2014. Check out our infographic depicting some of our key findings:

Newborn screening billboards hit the streets of the Twin Cities!

We are thrilled to announce the launch of a new public awareness billboard campaign. Billboards are located in the Twin Cities metro area with plans to extend the campaign to greater Minnesota later this year. The goal of the campaign is to increase public awareness of newborn screening and to encourage parents and expectant parents to discuss newborn screening with their providers.

The Newborn Screening Program has revised the screening cards used in Minnesota. With this new revision, we have a new business process that will change the way we bill your institution. The following documents detail these changes. Please contact Jill Simonetti at 651-201-5469 with any questions.

Early Hearing Detection & Intervention 2013 Annual Report

The Minnesota Department of Health Early Hearing Detection and Intervention (EHDI) Program has released its 2013 Annual Report. Check out program updates and improvements from last year, including legislative changes, quality improvement initiatives, and more.

Legislative changes to MDH retention practices for blood spots and test results set to take effect August 1, 2014

As of August 1, 2014, the Newborn Screening Program may store newborn screening blood spots and test results and use them for program operations as defined by Statute 144.125. If your baby's blood spots are collected on or after August 1, 2014, your baby's test results and any remaining blood spots will automatically be retained by the program unless you direct MDH to destroy them.

For blood spots collected before August 1, 2014, the Newborn Screening Program will continue to destroy newborn screening blood spots and test results according to the following timelines, unless a parent or guardian gives written consent for their extended storage and use:

blood spots with negative test results are destroyed within 78 days of the date MDH receives the newborn screening card

blood spots with positive test results are destroyed within 24 months and one week of the date MDH receives the newborn screening card

all test results are destroyed within 25 months of the last date they are reported

Retention practices for hearing screening results have not changed. Unless parents direct MDH to discontinue storing results, they are stored for a period not to exceed 18 years from an infant's date of birth.

For more information about parental options regarding the retention and/or destruction of test results and blood spots, please refer to the Parental Options page.

The Newborn Screening Program celebrates Lab Professional's Week!

Alisha's story

When I first applied for this job, I knew very little about newborn screening as a public health program. But during my interview I began to understand the depth and breadth of the program – how the lab not only tests the blood spots of each baby, but a genetic counselor will also connect the baby's care provider with a specialist if a result shows a baby is at risk for one of the disorders. I learned that dedicated staff members follow each baby with a positive result until he or she is diagnosed with a disorder or ruled as having a false positive result, to make sure all babies are connected with the care they need. And still more staff members are dedicated to designing and creating educational materials for parents and providers to guide them through each step of these processes. By the time I left my interview, I was thrilled about newborn screening!

I have now worked with Minnesota's Newborn Screening Program for five years as an analyst in the lab. As a member of the newborn screening team, I am helping to improve the outcome of – or even save – a baby's life every couple of days. This is truly a special program, and I consider myself lucky to be a part of it.

-Alisha, Laboratory Professional, Minnesota Newborn Screening Program

Dan's story

"Even non-superheroes save lives. I am an average lab rat doing daily tasks such as punching blood spots, running tests, and recording results. It is not a daily event that I uncover a life-threatening condition that affects a newborn, yet each normal result impacts babies and their families as well. Finding "nothing" is just as rewarding for me as finding a positive result. Each act saves lives and helps families know how to best care for their child. I do not need to save babies in a dramatic fashion to feel good about the importance of the job I do daily."

-Dan, Laboratory Specialist, Minnesota Newborn Screening Program
(Dan and several of his laboratory colleagues are pictured above)

Why pulse oximetry screening?

With the recent addition of critical congenital heart disease (CCHD) to Minnesota's screening panel, learn more about why pulse oximetry screening is an important part of newborn care. This video was made in collaboration with the University of Minnesota Amplatz Children's Hospital and the Newborn Foundation.

Conquering Rare Diseases Tweetchat: Tuesday, Feb. 1

Join the Newborn Screening Program as we take part in a tweetchat with Dr. Richard Besser, Chief of the ABC News Medical/Health Unit on Tuesday, Feb. 1 at 12 p.m. CST. The chat is cosponsored by the National Organization for Rare Diseases (NORD). To join the chat, use hashtag #abcDRBchat. To learn more, visit the Rare Disease Day USA website.

Newborn Screening Lawsuit Settled

The Minnesota Department of Health (MDH) has settled the lawsuit over its storage and use of newborn screening residual dried blood spots and test results. As a result of the case being settled, the district court order to preserve these blood spots and test results has been lifted and the department has begun destroying approximately 1.1 million archived blood spots and test results as required by a Minnesota Supreme Court ruling.

Online Ordering for Education Materials and Forms

Providers and parents can order free education materials and forms online through the Ordering Education Materials and Forms page. Just follow the link on the page, enter the relevant contact information and quantities needed, and click "Submit Request." Orders will be filled within 3-5 business days!